I wasn't prepared for what was coming.
My brother went to the ER monday morning. He was having chest pains. You don't want to mess with chest pains and he hadnt been feeling right for a few days. He got to work Monday and the pains got worse and were followed by dizziness and nausea. He left work and drove himself to the St. Vincents downtown emergency room. He spent the better part of the day in the ER undergoing all sorts of tests to see if he was having any sort of cardiac problem. After several hours of this they decided to admit him for observation and testing. I thought being the good caring brother that I am that I would run by there on the way home and check on him.
I left the office and drove downtown to the hospital. I had a lot on my mind that day. I have several ongoing projects with approaching deadlines and I was thinking about various details of them as I drove. I have to admit I was sort of in auto-pilot. You know how auto-pilot is, you just end up somewhere and dont even remember how you got there. Im sure if there had been a wreck or something in flames on the way there auto-pilot would have switched off and brought me back to consciousness. Maybe.
I drive downtown at least 3 or 4 times a week and I ahve been to St. Vincents at least 100 times or more so auto-pilot took me off of 280, down the off ramp and into the parking deck at the hospital. As soon as I parked I started thinking more about my brother and all of the things that might be causing his issues other than a heart problem. So again I was sort of in auto-pilot as I got out of the car, walked to elevator and pushed the button. I got in and rode it up to the lobby of the Womens and Childrens Center. I pressed the button for the elevator up to the crosswalk to the main hospital and got on the elevator with several other people who were going up.
The doors opened and I got out on the third floor and it started.
I stepped out of the elevator with the other people and the first thing I noticed was the odor. It was bad but it was that very distinct hospital / delivery suite smell. I didnt really know why at first but my heart started beating faster. I started walking to the crosswalk and my as of yet unrealized anxiety started to grow. I felt flush and I could feel small beads of sweat popping out on my forehead. It was now at the entrance to the bridge that I started to ask myself what was wrong. It was almost like I caught a virus with a 5 minute incubation period.
What the heck?
About 15 feet into the crosswalk the question was answered and in a matter of 3-1/2 seconds 21 days of hell came rushing back. The realization of where I was and what auto-pilot had let me do hit me like a blow to the chest. I was back. I had not been to St. Vincents since the day Noah was transferred to Children's NICU.
I am not prone to panic attacks, i don't get too overly emotional or worked up about much. Things usually slide off my back pretty easily. I'm a very laid back guy. None of that mattered. I stopped walking.
Keep walking. Cmon.
Breathe.
Not too much.
You need to keep walking.
I need to get the hell out of here.
I managed to pick my feet up and get moving.
Wait, not that fast.
Slow down. People are going to think your weird.
I dont give a damn.
In retrospect I think it was the lack of mental preparation that let me get to that bridge without realizing where I was. I spent so much time in autopilot on the way there that the reality of where I was going never occurred to me. I had unknowingly parked in the same deck, taken the same elevator and walked the same way that I went twice a day to see Noah in the NICU after he was born. I had returned to this place.
This is the place that my children were born. This is also the place that my son spent the first 21 days of his life in the NICU. This is the place that a "doctor" told me that my son would be institutionalized for his whole life. This is the place that pumped my son full of anti-seizure drugs for an epileptic condition that they were sure he had and could never find. This is the place that put IV's in my sons head. This is the place that told us that Noah surely had a variety of metabolic and genetic conditions that were most likely untreatable. This is the place that made me sit in a waiting room while my son had a series of seizures and let me think that he might have died.
This is the place that I learned that there are a lot of well meaning people who call themselves "doctors" that don't know much at all once you get them out of their little area of experience.
By the time I made it to the 6th floor where my brothers room was I had calmed down a little. My breathing heart rate were less frantic. I made it to my brothers room and spent a little time there checking on him. As it turns out he didnt have any cardiac issues. It appears that he has a gall bladder or stomach problem that is not too serious.
I left and headed home to my family who are healthy, happy and very much not institutionalized (although sometimes I think that we might need to be). I went back to my car a different way that didn't involve walking across that bridge.
I didn't drive home in auto-pilot.
Wow. I was wrong, I did cry when I read this. That was the most depressing place and we spent our darkest days there. I think, though, that you have to give them some credit. They kept our son alive so that Children's could help him live. (Does that make sense?). They did the best they could with the information they were given and are not equipped for extremely rare diseases. However, their bedside manner definitely needs improvement (except for the nurses. They were all wonderful). I guess to them that CCHS was a death sentence but they had never met Dr. Lozano or Dr. Makris. We showed them, especially that dumb geneticist! I have been back once since we left but not on the same floor. I did have a momentary panic in the parking deck because I remember so many times having to wait to drive home from there to let my vision clear and me calm down. I do know that whole experience changed us completely and I think it was for the better. I am proud of you for being strong, like you have been the past 18 months. You and the Mighty Noah are my heroes.
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